Tips for autistic adults managing diabetes
Studies suggest that having autism may be associated with a higher risk of diabetes, a disease that occurs when your blood glucose, also called blood sugar, is too high. Diabetes can lead to serious health problems, such as heart disease, vision loss and kidney disease. There are three types of diabetes – type 1, type 2 and then gestational, which only develops in pregnant women. Check out the American Diabetes Association for a list of the warning signs, which include feeling thirsty all the time, frequently urinating and blurry vision, among others.
If you are an autistic person concerned about your risk, are newly diagnosed or have been living with diabetes for a long time, two important things to remember are: you are not alone and you can live a healthy, long life with diabetes. In fact, while those with autism and diabetes may experience some unique challenges, some may find their preference for routine and attention to detail advantageous in management of the disease. With the help of contributor Lydia Wayman, an autistic adult who was diagnosed with type 1 diabetes at age 3, we share advice to help you manage diabetes and live a quality life.
Educate yourself on diabetes management
The more you understand about your diagnosis and treatment options, the more you will be empowered to manage your health and wellbeing. A good place to start reading is the American Diabetes Association and the CDC. But most hospitals, clinics, and even community-based providers, like YMCAs, offer diabetes education classes that are well worth your time. The best thing is they will connect you with your local diabetes community. Your diabetes care team should be able to connect you with such offerings or may even be running their own program. You can also check with your health insurance company to find out what programs and services it offers to people with diabetes.
Beyond that, explore different treatment options and technologies. Check out the websites of reputable university and research hospitals and search for diabetes management. Stay on top of current research into causes and cures for diabetes.
Work with a team of diabetes professionals
Having a team of medical professionals you can trust is invaluable in all aspects of your healthcare, but especially if you have diabetes. You will be checking in with your team often, perhaps even every week. It may seem like you are their student and they your teacher for a while, as you learn how to check your blood sugar, make healthy food choices, get proper amounts of physical activity and make other important decisions to maintain a healthy lifestyle. So you have to be comfortable communicating with them. That includes being comfortable telling them how you best communicate.
Self-advocacy tips when seeking medical care:
- Before going to an appointment, write down or print out your concerns. If it gets too hard to talk, you can hand your questions and concerns to a provider.
- Knowing about your needs in advance can help you prepare for a visit to a health care clinic, hospital or office. Do you have sensory issues? Do you get overstimulated? What do you need to be comfortable — sunglasses, headphones, a puzzle? Do you need your phone charged and ready so you can distract yourself? If you get very upset, what helps you? You can also ask health care providers for something in advance, if you know it would help, such as a quiet waiting room.
- In many states, a disabled person is allowed to bring someone along for appointments, tests, procedures, hospital visits and treatments to help you communicate or take notes for you, to help you with daily living tasks and to help you navigate the process. If healthcare providers refuse, ask them what the policy is for disabled people having an assistant. They may not be aware of the policy. If no one seems able to help you, again, try to talk to someone in charge. This can be hard to do, but you have rights.
- Most healthcare centers and hospitals have a social worker on duty or a "patient ombudsman" whose job is to help you advocate. A social worker or ombudsman can help you figure out your rights, complain if necessary and get the help you deserve.
- If you need help remembering your appointments, most healthcare offices have apps now that can text you reminders. You can even sometimes use the apps to communicate with doctors and nurses, make appointments, reschedule or cancel appointments and request medication refills. These apps can make health care much easier, so ask the office if they have an app you can use.
- If you do not use speech, you have a right to communicate with your health care provider in a way that works for you. For example, if you use an AAC device, the healthcare provider needs to wait for you to type out answers to questions. If you use American Sign Language (ASL), the hospital should have an interpreter. If you need the doctor to write down instructions, that is a very reasonable request. If English is not your main language, all hospitals have translators, but you often have to request a translator — they don't automatically know you need one.
- Lastly, you have the right to say no. Healthcare providers give us information and choices. Ultimately, your health treatments are your decision. If you ever feel pressured or uncomfortable about a health care decision, talk to someone you trust right away to get support.
While some may work with their primary care physician, most with diabetes will have an also have an endocrinologist. Endocrinologists are doctors who specialize in the treatment of hormone-related diseases like diabetes, thyroid dysfunction, obesity and work to correct hormonal imbalances. In addition to seeing an endocrinologist every 3-4 months, you may work with a Registered Dietitian (RD)/Registered Dietitian Nutritionist (RDN) or Certified Diabetes Care and Education Specialist (CDCES, sometimes referred to as a diabetes educator), if your blood sugars are not well-managed.
If you have had diabetes for many years, you can get so used to managing the day-to-day challenges that you forget that your team is there to provide support. But it is common for things to change and new issues to pop up, and sometimes your medical team can notice them before you. So it is important to keep all of your appointments, even if you are well.
Not every doctor or clinic is a good match, and it can take time to find the right fit. But it is worth it to do so. Working with a doctor and team that support and empower you to reach your goals is one of the best things you can do, not only for your blood sugars but for your overall quality of life.
For many autistic people, unexpected situations or changes in routine can bring a lot of anxiety and disrupt the whole day. Unfortunately, living with diabetes requires a certain degree of flexibility as unplanned situations and unpredictable blood sugars are almost unavoidable. The better prepared you are, the less anxiety you will feel in the moment. Here are some suggestions:
- Always carry medications and extra supplies with you when you leave the house.
- Talk to your doctor about how to adjust your normal treatment regimen in case you get sick.
- Wear a medical alert bracelet and/or carry a medical emergency card with your medical information and contacts.
- Review restaurant menus and nutrition information before going out to eat.
Make routines work for you
There are a lot of factors that can influence blood sugars, and not all of them are in our control. But some of the key variables are all about routine — nutrition, activity, and sleep. One way that autistic people tend to be uniquely suited to managing life with diabetes is our tendency to thrive with a routine.
Over time, you will start to see patterns in how each of these factors affect you, allowing you to make small adjustments that lead to better blood sugar control. Everyone is a little bit different, and it can take some trial and error to find a way of eating, moving, and dosing medications that works for you. As much as diabetes (and many autistic people) love routine, it’s important not to become so rigid that you can’t enjoy a full life.
Take care of your whole self
Sometimes, the daily grind of diabetes management can become overwhelming, and people start to experience burnout. Signs of burnout include missed or skipped doses of medications, glucose tests or appointments; symptoms of depression or anxiety; and feelings of hopelessness or indifference about the consequences of uncontrolled blood sugars. You can help to prevent or address burnout by engaging with your diabetes healthcare team, asking for support from friends or family, working with a mental health professional, and connecting with others who share your diagnosis.
Living well with diabetes requires a long-term commitment to your health that comes down to a lot of little moments. It’s important to keep in mind that there is no perfect plan that will result in optimal blood sugar control all the time. Even so, sometimes you can do everything right and your body just doesn’t respond as expected or the same way it did the last time. It’s important to recognize that striving for perfection or black-and-white thinking is often an exercise in frustration when it comes to diabetes. Focus on making the best choices you can in the moment and recognize that every small step in the right direction is a good one. Remember that the goal of good diabetes management is ultimately to allow you to enjoy more of the things that matter to you in life.
Contributor Lydia Wayman is an autistic advocate with a B.S. in education and an M.A. in English and nonfiction writing. Through her presentations, writing, and art, she uses her experience to support families and professionals by helping them understand how autistic kids see the world. She has worked at an autism resource center, mentored youth with disabilities, and spoken at Girl Scout events, parent-led groups, and conferences with her autistic peers. Her writing has appeared in magazines, books, and newspapers, and she has helped to develop several training programs and professional courses. Her work for Autism Speaks includes the Adult Autism Diagnosis Tool Kit, the Roadmap to Self-Empowerment for Autistic Adults, and articles on coping with the holidays and Social Media, among others.